Christopher Gillberg
Lars Christopher Gillberg, (born 19 April 1950) is a professor of Child and Adolescent Psychiatry at Gothenburg University in Gothenburg, Sweden, and at the medical college of St George's, University of London]] in Tooting in south London. He has also been a visiting professor at the universities of University of Bergen, New York, Odense, and San Fransisco.Munk-Jørgensen, P. (August 2003), "Biographies", [http://www.blackwellpublishing.com/journal.asp?ref=0001-690X Acta Psychiatrica Scandinavica], 108: 160, doi:10.1034/j.1600-0447.2003.00154.x. ISSN 0001-690X Gillberg is known for his research of autism in children, Asperger syndrome. ADHD and anorexia nervosa. He is the founding editor of the journal European Child & Adolescent Psychiatry, and is the author and editor of many scientific and educational books. He is the recipient of several scientific awards, including the Philips Nordic Prize 2004 for neurological research,Philips: Philips Nordic Prize for research within Neurodevelopmental Disorders. Accessed 19 August 2006. "Last year's winner: Christopher Gillberg." and he has more than 300 scientific papers listed in Medline. Gillberg has become known internationally for his contributions to various pioneering research projects into the genetics of autism. Gosline, Anna. "Roadmap to unravelling autism revealed". New Scientist, 28 Jun. 2005. Retrieved 20 Aug. 2006. In 2003, a French and Swedish research team at the Institut Pasteur psychiatric departments, University of Paris, led by Thomas Bourgeron, Marion Leboyer and Gillberg, made the first discovery of precisely identified genetic mutations in individuals with autism. The team identified mutations altering two genes on the X chromosome which seem to be implicated in the formation of synapses (communication spaces between neurons), in two families where several members are affected. Previous studies, such as the Paris Autism Research International Sib-Pair Study (PARIS), coordinated by Gillberg and Marion Leboyer, have more generally associated the X chromosome regions with autism. The 2003 break-through indicated the location of the mutation to be on the NLGN4 gene and the NGLN3 gene. The mutation prevents a complete protein from forming and is inherited from the mother.Betancur, Catalina et al.(2003). "Mutations of the X-linked genes encoding neuroligins NLGN3 and NLGN4 are associated with autism". Nature Genetics 34 (1): 27-29. DOI:10.1038/ng1136. ISSN 1061-4036. Press release: "Two genes associated with autism". Press Office, Institut Pasteur, University of Paris. 31 Mar. 2003. Retrieved 20 Aug. 2006. In Sweden, Gillberg is also known for his concern about the confidentiality of medical records and his role in a related controversy. Gillberg's criteria for Asperger's syndrome Gillberg's criteria are as follows (all six criteria must be met for confirmation of diagnosis): Gillberg IC, Gillberg C. "Asperger syndrome-some epidemiological considerations: A research note." J Child Psychol Psychiatry. 1989 Jul;30(4):631-8. PMID 2670981Attwood, Tony. "Asperger's Syndrome: A Guide for Parents and Professionals". Jessica Kingsley, London, 1997. ISBN 1-85302-577-1, pp. 195-196. #Severe impairment in reciprocal social interaction (at least two of the following) ##inability to interact with peers ##lack of desire to interact with peers ##lack of appreciation of social cues ##socially and emotionally inappropriate behavior #All-absorbing narrow interest (at least one of the following) ##exclusion of other activities ##repetitive adherence ##more rote than meaning #Imposition of routines and interests (at least one of the following) ##on self, in aspects of life ##on others #Speech and language problems (at least three of the following) ##delayed development ##superficially perfect expressive language ##formal, pedantic language ##odd prosody, peculiar voice characteristics ##impairment of comprehension including misinterpretations of literal/implied meanings #Non-verbal communication problems (at least one of the following) ##limited use of gestures ##clumsy/gauche body language ##limited facial expression ##inappropriate expression ##peculiar, stiff gaze #Motor clumsiness: poor performance on neurodevelopmental examination (These criteria are different than those given in theDSM-IV-TR.) DAMP, MBD, and ADHD Gillberg played a leading role in developing the concept DAMP (Deficits in Attention, Motor control and Perception) in the 1980s. The concept was based on previous attempts to define purely diagnostic criteria for MBD (Minimal Brain Dysfunction) independent of any hypotheses about etiology. Around 1990, DAMP had become a generally accepted diagnostic concept in the Nordic countries. When DSM-IV appeared in 1994, DAMP became a somewhat redundant term, since DAMP is essentially equivalent to ADHD in combination with DCD (dyspraxia) as defined by DSM-IV. (In the WHO system, it would be classified as a hyperkinetic disorder in combination with a developmental disorder of motor function.) About half of the children with ADHD also have DCD. Gillberg began to study DAMP in the late 1970s, when it was still called MBD. Since then, he has published around 80 papers on DAMP, ADHD and related conditions. Confidentiality vs. public access controversy One of Gillberg's early research projects, the Gothenburg studyHart, Deborah and Thomas Kennedy. "Five percent of children may have DAMP". A Mind Odyssey: Science and Caring, Royal College of Psychiatrists, London, 11 Jul. 2001. Retrieved 20 Aug. 2006., has become the center of a heated controversy in SwedenKennedy, Christina. "Applåder mötte den åtalade Gillberg utanför rättssalen" ("Prosecuted, Gillberg is met with applauds outside the courtroom").Dagens Medicin, online edition, 2 Jun. 2005, in Swedish. Retrieved 20 Aug. 2006. Paragraph 1: "Efter år av böcker, myndighetsbeslut, överklagade domar och ett oändligt antal debattartiklar landade forskarstriden slutligen i tingsrätten i förra veckan." (After years of books, decisions by government authorities, appeals and an endless number of debate articles, the research dispute finally landed in district court last week.). The controversy concerns the question to what extent the principle of public access, which in Sweden supports transparency in publicly funded activities, can be applied to sensitive data collected in medical studies involving human subjects. White, Caroline. "Clash over public access rights and patient confidentiality sparks trial". British Medical Journal, 2005;330:273, 5 Feb. 2005, doi:10.1136/bmj.330.7486.273-a. Retrieved 20 Aug. 2005.Osvald, Clara. "Professor Christopher Gillberg fälldes". ("Professor Christopher Gillberg convicted") Ekot, Sveriges Radio, 27 Jun. 2005, in Swedish. Retrieved 20 Aug. 2006. Background Beginning in 1996, pediatrician Leif Elinder criticized Gillberg's research and alleged that the numbers reported by Gillberg were made up. Elinder became associated with the sociologist Eva Kärfve at Lund University, whose research had been devoted to early witch hunts and medieval myths in Europe. They, along with others associated with the Church of Scientology, coordinated their criticism and Kärfve wrote a book, published in 2000, rejecting most of the research on DAMP, and especially Gillberg's. Other psychiatrists and neuroscientists in Sweden defended the Gillberg group and argued that Elinder and Kärfve had crossed the line from scientific criticism to personal attacks and vilification. Bejerot, Susanne et. al. "'Rättshaverist skadar dampforskningen'. Sex psykiatriforskare kräver ett slut på mångårig personlig kampanj" ('Litigious doctrinaire hurts damp research'. Six psychiatry researchers demand an end to the long-running personal campaign". Dagens Nyheter, 22 Jan. 2003, p. A04(A6 A2), in Swedish. Retrieved 20 Aug. 2006. The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to Gothenburg University, accusing the Gillberg group of scientific misconduct. The accusations were investigated by the Ethics Council and dismissed as baseless. Elinder and Kärfve also demanded access to the original research material for the main DAMP studies. Under a section of the Swedish basic law that grants citizens access to government documents, Elinder and Kärfve were given full access to the documents by an administrative court.Kammarrätten i Göteborg February 6, 2003 Dom i mål nr 5741-2002Kammarrätten i Göteborg February 6, 2003 Dom i mål nr 6208-2002 The University, the Gillberg group, and the participants of the study were stongly opposed to this decision, on the grounds that the material contained medical records and other sensitive information, and that the participants had been promised full confidentiality. Ahl, Viggo. "Mitt liv är dömt till offentlighet" (My life is condemned to public access). Göteborgs-Posten, 25 Jun. 2003. Retrieved 20 Aug. 2006. A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision.Regeringsrätten April 4, 2003 Avgörande i mål nr 1273-03 When all legal avenues had been exhausted, two of Gillberg's coworkers and a university administrator destroyed the 12–27 years old research material. In the legal aftermath, Gillberg and the Rector of Gothenburg University were found guilty of "misuse of office" for not complying with the administrative court's decision.White, C. "Swedish court rules against doctor at centre of row over destroyed research data". British Medical Journal, 23 Jul. 2005, 331(7510):180. PMID 16037439. Retrieved 20 Aug. 2006. Reaction to the ruling The court's decision to grant the two critics access to the data was very controversial. When the study participants were contacted by Gillberg and asked if they would be prepared to have the data released, all but one family refused. Because of that, and the promise given to the participants as a precondition, Gillberg and the other researchers felt obliged not to turn over the personal data.Osvald, Clara. Gillberg gav sin syn under rättegången (Gillberg gave his view during the trial). Ekot, Sveriges Radio, 25 May 2005, in Swedish. Retrieved 20 Aug. 2006 After the verdict, Johan Munch, chairman of the Central Ethical Review Board of Sweden declared that in Swedish legislation, the Principle of Public AccessPrinciple of Public Access. Ministry of Justice, Swedish Government Offices, 14 Jun. 2005. Retrieved 20 Aug. 2006. is incompatible with promises of confidentiality in medical research, and that the Central Ethical Review Board therefore no longer approves such promises. According to Martin Ingvar of the Karolinska Institute, medical researchers in Sweden would be forced to change the current practice because of the verdict. Ingvar told media that medical studies in Sweden must now adhere to a strict anonymization encoding, even in extensive studies like Gillberg’s which contain large amounts of clinical material collected over long periods of time, in spite of the increase in cost and the larger margins of error. 267 Swedish doctors signed a letter in support of Gillberg's decision not to hand over the data. 267 läkare stöder Christopher Gillberg mot JO. Dagens Medicin March 23, 2005. Elisabeth Rynning, a professor of Medical Law at the University of Uppsala questioned whether the court had been fully aware of the relevant laws. Access to these kinds of records may only be granted for the purpose of research or for the collection of statistics. Elinder had not stated any such purpose in his application, and Kärfve had only argued that the material would be useful for her research, not that it would actually be used in a research project. She was in fact not allowed to use the material in her research project, since that would have required a previous approval by an ethics committee. There was also the problem that Elinder and Kärfve requested the material as private citizens, while at the same time stating that they needed it in their professional capacities. If they had requested the material as representatives of their employers, the court would not have jurisdiction. Finally Rynning questioned how the court could decide that no one would be hurt, as the law requires, if Elinder and Kärfve were given full access to the data. Several participants had testified to the court that they would be deeply offended and hurt if Elinder and Kärfve could read their medical records.Rynning, Elisabeth. "Domarnas okunskap om lagen tvingade forskare till lagbrott" (The judges' lack of knowledge about the law forced researchers to break the law). Dagens Nyheter May 14, 2005. Aftermath In 2003, a bill was introduced in the Swedish parliament, Riksdagen, due to the secrecy issues raised during the trial that granted the two private individuals access to sensitive personal data.Motion 2003/04:K379. Sekretess och handlingars offentlighet (Secrecy and public documents). Motion till riksdagen, 2003/04:K379]. In 2004, a new law on ethical review of research involving humans was introduced. Changes were put in place in order to strengthen the protection for human subjects participating in medical research and to expand the scope of the ethical councils. Additional changes to bring the Swedish legislation closer to the European Commission directive are presently under review.SOU 2005:78 Changes in the ethical review act. Swedish government official report on ethical review, Sept. 2005 and Betänkande av Etikprövningsutredningen SOU 2005:78, Stockholm 2005, in Swedish. Retrieved 20 Aug. 2006. The files with the personal data collected during the Gothenburg study no longer exist. Two co-workers and a university administrator shredded the files. In defense of their their action, the two researchers (both chief physicians at Sahlgrenska University Hospital), referred to the promises of confidentiality that had been issued to the subjects of the study and the letters of objection that had been received from the families that they did not want their personal data used or shared with the private individuals. They argued that turning the files over would have exposed the researchers and the university to potential lawsuits from the subjects for failing to honor a written agreement.Gillberg, Christopher. "Forskare ger falska löften" (Researchers give false promises). Brännpunkt, Svenska Dagbladet, 13 May 2006. Retrieved 20 Aug. 2006. They were convicted and fined for destruction of government property. In July 2005 the lower criminal court in Gothenberg upheld the right of Kärfve and Elinder to see any data from the Gothenberg study still held by the University. The court fined Gillberg for "misuse of office". White, Caroline. "Swedish court rules against doctor at centre of row over destroyed research data". British Medical Journal, 2005;331:180 (23 July 2005).Retrieved 18 Dec. 2006.. See further * The Gothenburg Study of Children with DAMP Notes Selected publications by Gillberg Journal Articles * * * * * * * * Books * * * * * * * * External links *Philips Prize - Information about the Philips Prize *[http://www.springerlink.com/openurl.asp?genre=journal&issn=1018-8827 European Child & Adolescent Psychiatry] (journal) *The Autism Puzzle (A BBC documentary featuring Gillberg) *An interview with Gillberg in Looking Up (an autism newsletter) 3:12, 2005. *Kärfe, Elinder, and others defend their accusations - "Rapid responses" submitted to British Medical Journal, 2004 *Various responses to Kärfve Gothenburg University, 2001 (in Swedish) *[http://www.attention-riks.se/index.php?id=118,296,0,0,1,0 Riksförbundet Attention supports Gillberg] Official web page in Swedish, Aug 21, 2005. (Riksförbundet Attention is a national Swedish association for people with neuropsychiatric disabilities.) *[http://autism.verktyget.se/site.aspx?id=612 Riksföreningen Autism supports Gillberg] Press release in Swedish. Undated, 2006. (Riksföreningen Autism is the national Swedish association for people with autism and autism-like disorders.) *Letter to the Swedish Chancellor of Justice The Swedish Child Neuropsychiatry Science Foundation. Letter detailing the actions by Christopher Gillberg opponents, the involvement of public figures and the media, and the legal process. Category:Asperger syndrome Category:Medical researchers Category:Autism researchers Category:Swedish psychiatrists Category:Swedish physicians :sv:Christopher Gillberg